Diagnosis and Stress

I have been following some IBD accounts on Twitter and find many of the articles extremely interesting and helpful. My own IBD diagnosis came fairly recently, although I had been suffering from various symptoms for a considerable time before that.

A stool sample early 2018 showed signs of inflammation and I was sent for a colonoscopy in June. This highlighted ulceration but my consultant was reluctant to diagnose until the biopsy results came back. No problem, I thought – from reading online, I could see that I should expect these fairly quickly. How wrong I was. It was not until September that I got the results of the biopsy and was given a diagnosis of ulcerative colitis. It wasn’t entirely unexpected as I had found out recently that my maternal grandmother had suffered from the same disease. In fact, it was something of a relief, both from the point of view of finally being able to put a name to my condition and also the fact that I had had no idea my gran had been ill when growing up. So dealing with it must be a piece of cake, right? Especially now that the health professionals know what’s wrong with me and will be able to put things right, right?

Wrong.

On so many levels. I am relatively new to IBD but I am gradually beginning to understand some of the frustrations in relation to sufficient healthcare that many sufferers experience. I won’t go into it here (perhaps in a future article), as I want to share my particular diagnosis story in this piece. And anyway, as I have only recently been diagnosed, I have faith that things will get better in this regard as I build up a relationship with my consultant. I have also just discovered, via a friend rather than a health professional, that living in Scotland, I am entitled to access to a dedicated IBD nurse. I am hopeful that this will prove beneficial going forward.

Anyway, I was telling you about my diagnosis and my positivity on receiving it. I even had thoughts of maybe taking advantage of this predicament in which I now found myself; visions of being tucked up in bed with a hot water bottle, my wife tenderly mopping my brow whilst soft, gentle music played soothingly in the background and…

Enough of that. Timing is everything, and my ulcerative diagnosis had the timing of a b******. Less than a week after my colonoscopy, whilst everything was still up in the air in terms of diagnosis (but I still had aspirations of getting tenderly looked after), my wife received some devastating news. On following up on sight issues she had been experiencing, a scan had discovered a ‘mass’ on her optic nerve – a brain tumour. Suddenly everything was put into perspective as the family had an immediate crisis with which to contend. Now, I can hear some of you readers out there wondering, “Why the hell are you boring us with your diagnosis story when your wife has a brain tumour to deal with?” Well yeah, I get that. And I agree with you. However, time has passed, the operation to move the offending mass was a success and a biopsy showed the tumour was benign. Not only that, but my wife is getting better all the time and is now even back at work.

The point of my story is that I have discovered that my IBD does not react well to stress. There is never a good time to be diagnosed with ulcerative colitis but mine was at the worst possible time. I had an embarrassing moment on the eve of my wife’s operation. As she was getting set to go into the operating theatre for brain surgery and I was supposed to be strong and supportive, I began to feel really unwell and had to go and lie down. How do you think that made me feel? We can laugh about it now but, well, I’m sure you get the picture. The more I punished myself about not being there, the more the stress exacerbated my condition and the worse I felt.

My official diagnosis was in September and I was put on a low dosage of Octasa. Things seemed to be under control for a spell and my condition was relatively good. We went to Paris for a short break and I even managed some wine and enjoyed it. The first alcohol I had consumed in a long time which hadn’t had a detrimental effect on my condition. Great.
Then my mum died in November. Everything came crashing down. My contract at work also came to an end that month. With everything going on with my mum, I wasn’t really able to job search properly, although I did attend a number of interviews around this time and, thankfully, was successful in one.

Stress is a trigger

The new job was due to start in early January but everything came to a head around Christmas, my stress levels hit the roof and I experienced my first hospitalization. Sitting in that hospital bed, on a drip when I should have been sitting at my desk on my first week of a new job, I realised then that stress was a major trigger for my UC. I think I have others, although I am still trying to get to grips with my particular food-related triggers. My main concern for now, during the early stages of my life trying to control ulcerative colitis, is keeping stress to a bare minimum. The Christmas flare which hospitalized me is still affecting me, although I am not as bad as I was. A long course of steroids has finished and I am on a considerably higher dose of Octasa than before, but I don’t think I am close to the stage of medication properly controlling the condition. Getting the stress levels under control has to be the key for me, I think. That is priority number one this year. With a new puppy (I know – she was a reaction to my mum’s death but is now very much part of the family), a four-year-old son, a relatively new job (from which I am frustratingly having to take time off), trying to do a part-time MPhil and desperately wanting to move house, removing stress completely from my life is practically impossible.

Wish me luck!